Accutane Long Term Side Effects (Page 72)

I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

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Thank you Scott and everybody else for the advice,

I will be visiting the naturopath Monday. If that doesn't work out then I will take your advice. Thanks a lot and I should be back soon to give you an update.

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Anthony,

Since you are curious I will tell you more about experience with acne and Accutane. I should tell first tell you about my life before I developed severe acne conglobata. I had a very nice complexion with only one or two small pimples a year. I was a beautiful, confident girl who that had absolutely no problems making friends or getting a date. Then in July of 2011 I began to break out very badly around my jawline and it got worse each day until it covered my entire face. When I tried going to dermatologists they would give me all kinds of lotions, gels, and pills but nothing stopped my horrible acne. Both of my dermatologists had told me that I was the worst case they had ever seen and that they had no other treatments for me. I even tried alternative medicine by changing my diet and using a detox tea but nothing worked for me.

When I developed acne conglobata my life changed for the absolute worst. The acne was painful physically, emotionally, and socially. My cysts were very painful especially when I did anything moving my face like eating. In addition to pain my cysts would sometimes pop and leak pus. However, the physical pain was not nearly as bad as the emotional and social pain that I experienced. All of my self esteem and confidence was gone. I could not stand to look at myself in the mirror and some nights I would cry asking God for a cure. You could not have imagined the amount of shame and self loathing I felt for almost a year.

When I went back to college for my sophomore year I was treated a lot differently than before. Nearly everybody would stare or turn away when they saw my face. People were not nearly as friendly to me as when my face was clear. I even overheard two people I thought were my "friends" saying horrible things about my appearance behind my back. In a nutshell they said that they could not understand how I had gotten so ugly over the summer and that I needed proactiv times 1,000. Needless to say I was devastated and I did not leave my apartment for a few days. It was even worse when I went to other places. People again would stare at my acne sometimes in disgust. However, I would sometimes have to deal with people calling me ugly, asking what happened to my face, and etc. The worst thing that ever happened to me was when my mom convinced me to eat with her at our favorite restaurant. While we were in line waiting to get seated a man looked at me and said, " You should not be in restaurant until you something about your face." "People are trying to eat and the last thing we need is your face spoiling our appetites." Well I started to cry and I ran out the restaurant with my mom chasing me. I cried all the way home and into the night. After that I stopped going out except to go to class and sometimes I skipped classes because I didn't want to be seen that day. As result my grades started to decline and I was placed on academic detention.

My entire life was falling apart because of severe acne but I could not get rid it. My life seemed hopeless until my mom suggested that I try to contact The Doctors. Well I went on their website and luckily for me they needed guests that were suffering from embarrassing medical conditions. I wrote in praying that at least I would get some medical advice that could help me. My prayers were answered when I was told I would be one of the guests that would appear on the show. In August 2012 I appeared on The Doctors and it was the greatest day of my life. Dr. Travis Stork reassured me in front of the audience that I was not ugly, disgusting, or worthless. You can not imagine how much that comment alone uplifted me. Dr. Sandra Lee the dermatologist did some treatments on me and suggested that I should take Accutane. The show had set me up with a dermatologist in my hometown so I could continue my treatments. My dermatologist again had strongly suggested that I should take Accutane since I had a very aggressive form of acne called acne conglobata which is not only very difficult to treat but is notorious for leaving disfiguring scars. So I was put 60 mg a day for 6 months along with cortisone shots with laser treatment. While on Accutane I experienced dry lips, eyes, and some joint paint which all went away after I finished my course.

I have to be honest and say that Accutane has given me my life back. When I had acne conglobata I was not myself but only a pathetic shadow of my former self. I am now able to be the person I once was before my acne. When I go to class or anywhere else I no longer have to fear how people will react to my face. I no longer avoid seeing friends and family because I am ashamed of my appearance.

If I did not have Accutane available to me I couldn't have had the chance the enjoy a normal life. I would have had to deal with the stares, the insults, and social prejudice for life. There are a lot of myths about acne that the public believes. They assume that it's your fault for being unhygienic or eating the wrong foods. As a result they believe that they have the right to stare, to criticize, and mock you when they see your acne. Not to mention that I would have had a hard time looking in the for the rest of my life.

My uncle who is my father's older brother started to suffer from very severe acne at the age of 17. Since he was 17 in 1971 he of course did not have Accutane available for him. My father witnessed his confident older brother become a shell of his former self. He was relentlessly bullied in school and was the victim of snide remarks in public. My uncle had tried everything but nothing worked. His acne had improved significantly by the time he was in his late 20's but it was too late since my uncle's skin was severely scarred. When I say scarred I mean it's worse than any result from searching acne scars. I only met my uncle once when I was 14 years old while my dad and I were at a gas station. When I met him I was glad to meet him but I also wondered the entire time what had happened to his face. I could tell that he was ashamed of his scars because he could barely make eye contact with me.Later I asked my father if my uncle was in an accident and he explained to me that those were scars from severe acne.

After my acne cleared I was able to surprise my father with my clear skin. My father actually had tears in his eyes because he was so happy for me. We started to talk and somehow we started to talk about my uncle. My father had told me that sometimes he could not sleep at night when I had acne because he worried that I would have had to deal with severe acne for at least a decade and scarring like my uncle did. He wondered how different my uncle's life would have been if he had Accutane available in the 1970's. He speculated that my uncle would have been married and would not have been a truck driver. He knew for sure that my uncle would have been a lot more confident and been more willing to be around family.

In my opinion Accutane should be available to those with severe acne. Yes there are other drugs but they either not effective or you relapse as soon as you get off them. I know about the possible side effects but a person should be able to decide for themselves whether or not the benefits outweigh the risks. You can have more warnings but at the end of the day you should have that option open to you. The drug may be risky but it's seriously the only chance of living a normal life if you suffer from very severe acne. Let's get real it's very hard to live a normal life when your face is like this or deformed in any way.

Links:
img.medscape.com/article/707/662/707662-fig6.jpg
thedoctorstv.com/videolib/init/6746
thedoctorstv.com/videolib/init/6747

P.S Anthony Accutane is used in mild or moderate acne. In fact most prescription go to moderate acne instead of severe acne.

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Anthony,

I was trying to post more about my experience but my post isn't up yet. Maybe I should try again in a few days.

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No problem Brittany. I noticed your age after I posted. I stopped my course at the age of 20 (4 years ago), so similar to you in terms of when we stopped. It wasn't until 23 years old that I really noticed some more debilitating problems.

My eyes are what bother me most. I really hope that nothing happens for you. I thought I was clear and after I stopped the meds it was only a matter of time before I recovered. Well unfortunately I think the real damage doesn't show for a while. Best wishes to you.

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"if you cared about your children you should have researched the effects of accutane BEFORE you let your kid take it thats what my mom did".
Boy, Miranda Moore, those are some harsh words spoken to mothers of teens who took Accutane. Good for your mom, but I would seriously think a little harder next time you make a statement like that. Do you honestly think all of the moms of the people suffering here didn't care about them as teenagers being tormented by self-esteem-crushing acne?
I was one of those teens and, in my eyes, my mom cared about me so much she wanted to do all she could to make me feel okay about myself.
As for your remark, "its not like you can't read up about the stuff on the internet"- Yes, it was like that in 1988. Do your homework and stop judging others!

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Hi Brandy, I hope this finds you well and that you have some idea of what you're dealing with now. I'm truly sorry to hear sbout your struggle. I find your experience to be very similar to mine. I took Accutane about 1994-1995, toward the end of highschool. My dermatologist wanted to try accutane after I'd tried antibiotics and creams. I began having symptoms about a year after I stopped taking accutane. I had no previous bladder issues or pain. I still remember what my dermatologist told me about accutane, it will continue to dry you out for at least a year after you stop taking it. The symptoms were and still are like a UTI every day, although I've never come up positive for a UTI. Nighttime is the killer for me, the pain causes me alpha-delta sleep disorder. Basically, the pain interferes with my restorative sleep, which means I get an extremely poor quality sleep and feel both in pain and exhausted to start everyday) After years of testing, procedures, treatments, and surgeries while seeing 2 "top" urologist who I was referred to in the medical center in Houston, both specialist threw up their hands and said "sorry we have nothing more to offer you" and never mentioned Interstitial Cystitis. It wasn't until about 5 years later, I'd given up finding answers, my GP referred me to another urologist. He diagnosed immediatly me with IC after my initial consultation during which we only discussed my symptoms and history. He did a hydrodistention later, at the point he saw cracked and bloody tissue and sent a biopsy to the pathologist. The pathologist found it consistent with IC. I was prescribed Elmiron for IC 4 different times since the IC diagnosis. Each time taking the medicine for over one year, but to no avail. I moved a couple of years ago. Since moving I've been diagnosed interstitial cystitis by another urologist. My current urologist calls it chronic cystitis of the bladder, he avoids calling it IC. The only thing I've found that helps to lessen the intensity of symptoms somewhat is diet. I've followed the IC diet for 2+ years. Actually, I'm not eating nightshades or gluten. I recently cut rice out too, I want to see if it could be contributing inflammation to my body/symptoms. Accutane causes damage in many patients GI, it is not a stretch to see similar effects to the similar tissue in the GI. Both are mucus membranes, which I dried as a result of this medication. The pharmacy and doctor warn accutane will dry mouth, lips, nose, eyes. If accutane will cause cracked and bleeding lips and dryness throughout the body, it makes sense of my "cracked and bloody bladder". I feel this is why the IC diet works. A diet low in acidic foods and low in anything that could be an irritant to sensitive tissue would make sense if the lining of the bladder had been compromised. It's like a wound that does not heal. My life has been severely effected by these symptoms/side effects. I am interested in a legal settlement for damages, but firms involved in case suits are to my knowledge only taking clients who suffer from 3 specific GI diseases/disorders, no bladder cases. How is your condition? I wish you healing and peace.
William

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I found this thread tonight while searching for information on Accutane because of my niece. She took this medicine for six months last year - she was twelve years old. She became extremely depressed during the treatment and seemed to become a different child. She completed the course of treatment and her acne was completely cleared up. She seemed like she was herself again when I was around her. She was admitted to a psychiatric hospital today - evidently she has been having psychotic episodes. I can't help but think it has to have something to do with this medicine. She was a perfectly normal, happy-go-lucky seventh grade girl before she started taking this. Could the medicine still be in her system or is this a permanent side-effect? I think she's been off of it about six months now.

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Just to circle back to the OP, Scott it has been almost 4 and a half years since you started his topic. What is he update on your son? Very curious. Thanks for sharing and I hope you see this.

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Terrified Aunt.. Being a chemo drug unfortunately it is loke a short circuit in the brain and body.. Cells are destroyed along with more sensative nerves etc. diet does play a part & can worsen symptoms. The drug is equivalent to a vit A overdose.. My son got worse with head pain etc after eating sweet corn which is hugh in vitA. My heart goes out to the young girl and her family.. Cut out processed foods etc is a way forward. Good luck & keep us posted x

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Hello terrified aunt. my prayers go to you and your family member suffering from this horrible drug. My younger brother took this medicine 7 years ago. Im not really sure how much he took but im quite sure he took it for more than 2 courses. On his 24th birthday, he spent his birthday at the psychiatric ward. He had schizophrenic episodes. I feel really bad for not having been there for him to support him and to tell him not to take accutane coz he was not with the family and was abroad in canada for studying. from a good student and a super athlete, he is now super thin and can barely do any round houses. he was on his way to becoming a black belt and was super energetic, to now a quiet, and having difficulty understanding the normality of life. He has completely lost it and i feel bad and want to really find out a way to ban this drug for life. we do not have any history in the family of schizophrenia and we were all puzzled that when he came home to us he had wild depression and couldnt even lift his head or talk straight. its so sad that a young kid has to go thru this and not live a normal life. Its been more than a year now that he is on psychotic meds. I pray that he can recover but it seems that the wild side effects are permanent. I hope the doctor that gave him this prescription suffers a great deal somehow. Of course life is filled with regrets. I hope people can learn from the mistakes of others and that everyone have the strength to fight this battle. Hope your family member recovers from this setback. vitamin A poisoning is serious and I sure hope there is a cure aside from the wild meds he is given. He can barely function with all the olanzapine and other stuff they give him. he has been on tons of psychotic meds and all in all, i can say that he functions better on just olanzapine. Please keep us posted on how she is. its going to be a very long battle so please stay strong.

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Terrified Aunt,
So sorry to hear about your niece. It is my understanding Accutane or its generic brands can not be given to anyone under 14 in USA. Also she should of been placed on birth control meds to prevent pregnancy. Where do you live,
May God Bless,
From the Heart,
Scott

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Hi Anthony,
Thank You for asking about my son. He will be 23 years old next month. He has been through many test and seen many specialist. But NO DOCTOR will admit Amnesteem had anything to due with his current health problems. He graduated college with two majors and currently working full time for a cell phone company.
His spirits are usually good, although he has been very hard to read since taking Amnesteem. He, like so may others on here was a excellent athlete but now left with daily aches and pains even to wash a car. He was operated on for Compartment Syndrome 4 years ago on one leg. He was unable to walk without pain prior to his operation. From me taking him over a three state area over the last 8 years looking for guidance for health care with No help from anyone, he mostly keeps his daily pains to himself. He still has blood from his colon from time to time but doesn't like to talk about it. He also started to have abnormal hair loss about a 8 months after his 6 month treatment. He shaves his hair short now. I would recommend to anyone that has bone or joint pain to see if your doctor will order a full body bone scan. This was done and it showed arthritic changes in both shoulders, both wrist and right hand . This was done about 5 years ago. At least we have a starting point on why he has aches in same places bone scan showed problems and we can use these scans to compare them in years to come. I wish he could exercise more than he does for his overall health. We have learned to take one day, week, month at a time hoping his health will not get worse. He has Irritable Bowel Syndrome and has to watch what he eats. He like so many others, has so many of the side effects that an overdose of Vitamin A does to the body and so many copy cat diseases that his doctors can't or won't explain.

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thank you for your advice, i was on roaccutane 20 mg for 2 weeks but yesterday i stopped it because of its dangerous side effects, but im afraid that these two weeks on accutane would make me suffer!..

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Lina .. look on the bright side you were only on it 2 weeks.. You have a better chance than most of not getting any problems. Hopefully you were not on it long enough..
My son started being ill after 6 weeks.. Nearly 3 yrs now and he still is not fit to do anything as he suffers permanent Migraine as well joint pains & eye problems. The longer he keeps his eyes open the worse they hurt and the more intense the Migraine and head pains become..

Best of luck to you

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my heart goes to you and everyone .

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Anyone in Houston Ill help yah for free my brothers and sisters

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I took accutane as a teenager. I am now 24. In the last three months I have had my liver, my gabladder, an endoscopy, panceras tested, and taken to the hospital by ambulance once, and all tests came back normal. No one can figure out why I threw up all my food after eating and occasionally I throw up blood. I usually have mild back pain which the chiropractor relieves that pain, my non dominant shoulder and both wrists cause pain as well.

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You can research all you want on the internet, when a doctor says side effects do NOT happen and tells you not to worry, it tends to somewhat override the stuff you read from people whom you think are simply crazy writing stuff on the internet to vent.

Then you're crazy as well and go to the toilet 6 times a day with bloody stools.

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I have unexplained unmanagible stomach problems myself. I'm nineteen and started taking the drug when I was 14. This drug has in some aspects ruined my life. I recommend getting this drug off the market befor we hurt anymore youths.

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So for the last month almost I have been dealing with what I believe to be inflammatory bowel disease. It's odd that this pops up right around the time I start talking about my symptoms on the forum. I'm worried it's not merely coincidence and related to something else. I'm currently on day 4 of a 7 day rapid body cleanse of the liver and colon so I hope afterwards things return more to normal. Scott, would you be so kind to relay some of the gastrointestinal issues your son dealt with in the early stages? What were the first symptoms and what has he done to help treat and combat the problems? Thanks.

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